Leaning Into Sharp Points:Practical Guidence and Nuturing Support for Caregivers

ELISABETH KUBLER-ROSS FOUNDATION-Dianne Gray, board member of Elisabeth Kübler-Ross Foundation and president of Hospice and Healthcare Communications

“Gentle and supportive, Stan Goldberg’s essential book should stay on your nightstand throughout the long process from diagnosis to death. You will turn to it again and again for practical, crucial guidance that you will use immediately, and often. I wish I had had such a guide fifteen years ago when I began caring for my son who passed away. I recommend this book for anyone who is, will be, or may become a caregiver.”

“Stan Goldberg brings wisdom and personal experience as a caregiver and hospice volunteer to this compassionate and honest guide to providing care for one who is chronically or terminally ill. Written from the perspective of both the caregiver and the one who is receiving the care, it is a sensitive, rich, and often compelling resource.”

OPEN TO HOPE FOUNDATION–Gloria C. Horsley, Ph.D., President and Founder, co-author of Open to Hope Inspirational Stories of Healing After Loss

Caregiving is one of the most noble yet unacknowledged activities in our mobile society. With the break up of the extended family we have lost much of our innate ability and knowledge regarding caring for the dying. Stan Goldberg, through keen observation and personal experience gives the reader valuable insights and practical advice on what to expect and how to survive one of life’s most challenging experiences.

EXCERPT

Statistics show that at least once in almost everyone’s life, they will become a caregiver. Though an estimated 35 million currently provide care for someone terminally or chronically ill, those who accept this responsibility often feel as alone as if they were in a frightening foreign land. Whether visiting occasionally or caregiving 24/7, they are brushing up against life’s sharpest point.

“How do I do this?” he said. His wife was just enrolled in hospice. “We’ve been married for 40 years, but God help me, I don’t know what I should be doing.” It was my first visit and the question was unexpected.

It’s a question asked by millions of people every day when they anticipate or find themselves thrust into the role of caregiver for a loved one who is dying. Their involvement may be continuous, providing physical and emotional care, or sporadic and limited to conversations ranging from pleasantries to final goodbyes. While everyone wants to “do the right thing,” few have had the experience.

* How do you begin the conversation of how much loved ones have meant and how much they’ll be missed?

* How do you ask for forgiveness for unskillful acts and words?

* Why is it important to sit rather than stand with a dying loved one?

* How do you give permission to die?

It is the lack of answers to questions of this type that repeatedly torment caregivers after their loved ones have died.

That’s what this book will attempt to change. It’s not a manual on death, or a blueprint of step-by-step directions for caregiving. This is a book of preparation. Preparation for significant others who want to be as helpful as they can for their partners. For adult children who want to repay their aging parents for a lifetime of love.

For family and friends who want to do what they can for people who have been an important part of their lives. And for parents who may have the dreadful task of helping their adult or young children to die. It’s also for those in the health caring professions who want to have a more in-depth understanding of the emotional turmoil that follows caregivers throughout the dying process.

Two terms are repeatedly used: caregiver and loved one. “Caregiver” is an inclusive term applied to anyone who wants to compassionately serve someone who is dying. “Loved one” is the person fortunate enough to have someone who wants to serve his or her needs. They are terms that apply to all of us; if not now then sometime in the future.

For the past eight years in San Francisco, I’ve had the privilege of being invited into the lives of dying patients and their families. The experiences have been nothing short of transformative. As a bedside hospice and vigil volunteer, I’ve served patients and their families as a compassionate friend and a midwife to death.

After thousands of weekly interactions I began seeing regularities and I listened to words that made some deaths easier than others. As a communication counselor for more than thirty years, I witnessed how the verbal and nonverbal transmission of heart-felt feelings affected the deaths of loved ones and enriched the lives of those who survived them.

What my patients and their families taught me was that how we prepare loved ones for their deaths, not only affects the peacefulness of their journey, but also the duration and severity of the survivors’ grief.

Most people look at death as if it is a single event, analogous to a light switch—the light is on or it’s off; someone is alive, then they aren’t. But death is a process that spans time, beginning with a terminal diagnosis and ending with working through grief.

How loved ones deal with it is analogous to a square dance where partners are continuously changing. But instead of other dancers, loved ones’ hands may be held by fears, beliefs, an unresolved past, and a nonexistent future. Into this witch’s brew steps caregivers whose primary goal is to help loved ones die more peacefully. They learn very quickly that death, both as a concept and a reality, is messy.

Death is always seen through the perspective of one’s own history, values, and fears. It is inherently tied to loss—what one had, what one will lose, and what will never occur. As it approaches, time frames shift almost effortlessly from the past to the present to the future in ways that are less than orderly.

There is a saying that death is to living as the elephant is to the jungle; both leave the biggest footprint. Yet, we in western society treat death’s impending approach as if it was a squirrel. We use words such as “eternal sleep,” “going back home,” “passing away,” “crossing over,” and many other terms and phrases that attempt to soften the end of life.

As afraid as we may be, our fears become even more magnified when it comes to being honest with our children. We hide the knowledge that a loved one is dying, believing that our action will spare them emotional distress. And when they pointedly ask about the absence or condition of a relative, we often become as disfluent as if we were answering a young child’s question of how babies are made.

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